Background – Prior to the COVID-19 pandemic, parents expecting a newborn with myelomeningocele at the authors’ institution were routinely seen by a neurosurgeon for prenatal consultation and education to prepare for future challenges as part of a multi-disciplinary clinic. The purpose of this study is to evaluate the perception of usefulness and effectiveness of the prenatal, multidisciplinary, high-risk pregnancy clinic (HRPC) and retrospectively determine what information families wish they had learned. Methods – Mothers of children with spina bifida completed a demographic survey about their HRPC experience. Using a five-point Likert scale, mothers evaluated their overall preparedness, spina bifida education, delivery plans, surgical expectations, and expectations in terms of quality of life and development. Comments were collected regarding which portion of the educational process was most useful, what was unhelpful/anxiety-causing, and what they wish would have been included in the process. Descriptive statistics are reported.

Results – Seventy-one mothers completed the survey (of 72 approached, 98.6%). Thirty-eight (53.5%) received no prenatal education, 9 (12.7%) received prenatal education at other institutions, and 24 (33.8%) attended HRPC at the authors’ institution. Mothers who attended HRPC felt more informed and prepared throughout their pregnancy (M = 4.28) compared to mothers who did not (M = 3.47). Mothers who received prenatal counseling from the authors’ HRPC environment or other clinics perceived it as beneficial, answering “agreed” or “strongly agreed” with the statement “I benefited from the discussion in prenatal clinic” (79.2% and 78%, respectively).

When scoring how well their experience met their expectations, based on what they knew before childbirth, the average was 3.66 among parents who attended HRPC clinic versus 3.26 for those who did not. The main perceived benefits were connecting parents to social support groups and meeting the coordinator to help navigate the process. Conclusion – Prenatal counseling and the HRPC provide perceived utility to families and mothers.